The Stories That Can't Be Told

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Recently I reported on the cultural challenges faced by HIV and AIDS prevention educators in the Latino community. A local health center was holding an open house where people could receive free and confidential testing throughout the day.

I filmed carefully in the lobby, avoiding faces. I filmed in the community room where people wandered in and out in search of snacks and information. Ultimately, I told the story of Latino HIV and AIDS communication through the eyes of educators.

But the story I wanted to tell was a different one. I wanted to see what it was like for a person to come into the testing center, be given an anonymous number, sit in the examination room and find out whether he or she was free of disease.

HIPAA laws, which govern the confidentiality of health information, prohibited my exploration of this story, and for good reason. An investigation into personal health is intimate. In the case of sexually transmitted disease, it can also be confusing and fear inducing.

A patient eventually agreed to speak with me, but even then I was wary of intruding on her privacy. I filmed her hands as she opened a safe-sex kit from the testing center and rifled through dental dams and lubricants. I pointed my camera at a beige wall and recorded her voice as she noted that it took only 20 minutes to get the results of her HIV rapid test. I didn’t have the chance to film more intimate and potentially compelling moments—I didn’t film her as she settled into her appointment room and waited for a clinician to return with test results.

Last year, I underwent the full battery of STD testing when my boyfriend and I became serious. Even though I felt confident my results would come back negative, I couldn’t suppress the unease I felt while waiting for results.

But what does everyone else feel? Was I imagining the patient’s internal discomfort while giving blood and urine samples to her clinician? Was I inventing the drama of moments spent awaiting results in the examining room?

This is the quandary in trying to tell stories like this – about personal health, disease, and medicine – sometimes they can’t be told. Given more time and more experience as a reporter, maybe I could have earned the credentials to convince a health center and their patients to work with me. I might have told a better story about HIV testing in the Latino community if I had been able to add an individual patient’s perspective.

On deadline and new to reporting, I only caught a glimpse of a world that is intensely important and intensely private. My story barely scratched the surface of what goes on in that world, but I do think it was a good start.

- blog by Sarah White, graduate student reporter, Medill School of Journalism, Northwestern University

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